What an amazing, humanizing, project and video. Usually stuff like this rubs me the wrong way, but this felt different and lacked that exploitative quality (maybe because it's not a project specifically about disabled/chronically ill people?)

I love the way she talks about her body and her life so much - I can relate to her story even though her personal and health experiences are magnified by the severity and visibility of her illness, and the intensity of the history with her family...

Social media makes life - even personal life - oddly impersonal. We click "like" and feel like we've REALLY supported someone (emotionally, or in their work), instead of actually giving real tangible support. For example, someone is fundraising for a project or a charity, or showing their artwork, and we click "like" and feel like we did something good to support them, when really we did nothing. We no longer feel any obligation to actually put our energy or money where our mouth (or mouse?) is. We don't really show up for people.
We post our thoughts and feel like we're actually talking to people, but when we read people's posts, we feel like they weren't really trying to communicate with us. So few people will actually respond to a meaningful or heartfelt post in any earnest or genuine way. We'd rather assume it wasn't for us, or maybe we feel uncomfortable, and we decide it's best to do nothing.

Happy fall equinox folks! I'm so happy to be finally feeling the hints of fall arriving... Back to school has arrived a little late where I live (thanks to a long teacher's strike here), so I guess this still counts as back to school time! Even if you (or a little one in your life) isn't actually going back to school, it's easy to still get wrapped up in that feeling of possibility and wondering what the next many months will bring...

My latest Heartgirl's message feels so very appropriate for this time of year, as it can be one that brings up those feelings of wondering if you'll be accepted by your peers, if your teacher will like you, if life is going to be a struggle or if it's going to feel easy as delicious pie... Sometimes we need a little reminder of just how wonderful we really are.

I discovered this video by Hank Green (of Vlog Brothers fame) last night, and had to share it here. I used to watch Hank and John Green's videos religiously, back in the Brotherhood 2.0 days (this will all be gibberish to the non-Nerdfighters out there). But then there was just so much stuff on the internet that it became impossible to keep up on everything I wanted to read and watch, so I just catch the odd video here and there... All this to say, somehow I missed this video.

Last night I was feeling super duper down on myself and life because of how shitty and sick I've been feeling lately, and was reading some internets, and down the internet vortex I went, and I ended up at this video, and sometimes the internet is just wise and leads you to exactly what you need in that very moment. I hope you'll watch it, because I relate a ton to what he says.

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

I wanted to write a quick post to announce a new Heartgirl drawing, the first since I completed the original six. This one's message: You are not a lost cause.

Did someone give up on you? Did you give up on yourself? Is it all too far gone, rock bottomed right out, down in a deep dark bottomless pit that you'll never crawl out of? No, no, you are not done yet. Nowhere near out for the count. Don't let them write you off, and certainly don't give up on yourself. You have strength within you that you never knew existed... and they don't know a thing about it. If I know one thing, I know this: I am not a lost cause, and neither are you!

Last week, I wrote this long blathery post about navigating friendship with chronic illness. Then I sat on it for several days. I'm still sitting on it. Something about it didn't quite feel right...

Friendships, or really any relationships, and how they last or don't doesn't actually have much to do with whether you're chronically ill or not. Chronic illness is just one among the many things that can make or break any close relationships - things like going through a breakup, a divorce, a death in the family, a major career change, financial woes, the birth of a child... Anything that shakes you out of your routine and your comfort zone, and pushes you into the unknown, into grief and loss, or the new and unfamiliar. Anything that makes your life afterwards somewhat (or very) unrecognizable.

I've lost a LOT of friends over the past five years. If I started listing them all, I might have a full on self-hate and shame meltdown. ("It must be me!!!!" "What will people think????") It'd be like having a scarlet letter on my sweater - except F for Failed Friend.

The thing is - it is me, not them. Yes, me. My unwillingness to be taken advantage of. My unwillingness for a relationship to be completely on another person's terms. My failing tolerance of my kindness being taken for granted. My finally standing up for myself, and learning that I am worthy enough not to go chasing and pandering after people who don't really care about me the way I deserve.

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

Update March 2015: Strange twist... I finally saw my (old) immunologist who I trust very much, and without getting into all the details, it turns out that the "allergist" who did the test that led to my supposedly being glycerin sensitive wasn't actually a certified allergist at all. The test that was done was not standard and the reaction was simple skin irritation (not an allergic response). After about 10 months of avoidance, I've started using glycerin-containing products again with no problems.

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Delving into the waaaaaay obscure health topics here folks, this probably won't interest most of you. But some of my most obscure and specific health posts are the most viewed ones on here by a long shot, so I know that people are looking for this info. I wished so much that I had access to a post like this, so I spent some time writing it up for whoever is next to be in this sticky situation.

A while back, I attempted to get some allergy testing done, and came out of it not even having had the tests done, and instead labeled with a glycerin sensitivity. I'm going to save all the sordid details of this, maybe for some other time (I still have to go through some further investigations to figure out what's going on), but the long and short of it is that since then I've had to remove glycerin containing products from my life as much as possible. (The only things I haven't found replacements for and am still using are quite ironically my antihistamine pills, Reactine, and cortisone cream. There is a "Cortate ointment" petroleum based alternative, but I don't find it works as well.)

You would not believe how many personal care products, soaps, and medications have glycerin in them, it's RIDICULOUS. Not exagerating, probably 99% or more. It's safe to say I have been slathering myself in copious amounts of glycerin for most of my life - which is hopefully a good sign that my sensitivity isn't terribly severe, but it may have been impacting the overall burden on my body. It's extremely hard to find products that don't have it, and it's not only inconvenient but incredibly expensive, suddenly having to replace everything you own with more obscure and pricier products.

Limits. We don't like them. We don't want to be told by anyone - not even ourselves - what we can or can't do. That each of us will eventually hit a wall at some point.

While working on my previous post on illness and beauty/body image, I had several conversations with different friends, and one of the topics that people kept really honing in on was denial. An email exchange with a friend turned into a long rant on my part, and I thought it was worth sharing, so I've fleshed it out into this post - I feel like it's a very important awareness to develop.